Donna
Simon contracted Covid in January 2021 aged 68. When in hospital he struggled with his breathing, he was mechanically ventilated. After 33 days he deteriorated significantly. Donna and Simon’s children were able to see him before he passed away. Donna was interviewed for the study in April 2021.
Donna works as a senior health assistant in the community. Donna and Simon had been married for 31 years and have one daughter together, who is 27. Simon had two children in a previous marriage, who are in their forties. White British.
More about me...
Donna participated in an interview for the study three months after her husband had died in ICU from Covid. Donna works in healthcare. Simon worked in education. The family had been careful with the risk of contracting Covid: they had worn masks, slept in separate bedrooms and had not gone to many places outside of the home. Simon had some health issues, but neither of them had felt that these put him at significant risk.
Onset
In January 2021 Simon began to struggle with his breathing. Looking back, Donna thinks she would have called for help earlier if public health messages had reflected a wider range of symptoms beyond cough, lethargy and fever. Simon had other symptoms: diarrhoea, collapsing, confusion, some delirium. When Donna called 111, she was advised to get an oximeter. When she did and used this to measure Simon’s oxygen levels, these were very low. When Donna called 111 again, she was advised to call 999. The ambulance, however, was busy and could not take Simon to hospital.
Donna herself had tested positive for Covid, which meant that she was unable to drive her husband to A&E. She called their daughter Sophie, who had herself just recovered from Covid and was back at work and she took him in. At this point the whole family felt that Simon probably needed some oxygen and would then come back home.
In hospital
In hospital Simon was given steroids and oxygen. The family communicated via WhatsApp and text, which meant that Donna and her daughter knew roughly how he was. The phone their “lifeline”, especially as communication on the ward was somewhat slow at the time.
As Simon continued to struggle with his breathing, he was moved to ICU and put on CPAP. He soon improved and was moved back to the ward. At this time he communicated that he was afraid of going back to ICU. When Donna and Sophie called Simon’s breathing was often laboured, so they kept the calls short to help him manage his breathing.
When communication with Simon suddenly stopped
Then the messages suddenly stopped, and Donna called the hospital to find out how Simon was. She found out that he had been ventilated, and that the decision had to be made so rapidly that the team had not been in contact with Donna and her daughter beforehand. Donna said she understood why this had to be done this way, but this meant there had been no opportunity to say goodbye. She has spoken to the patient liaison service, PALS, to gain a better understanding of how these decisions are reached, and how it may have unfolded in Simon’s case. This had helped her to come to terms with it.
Liaising with ICU staff
When Simon was unconscious, Donna and her daughter liaised with the ICU staff, who were giving the family daily updates. The hardest thing for Donna was waiting by the phone: she sat at the phone for weeks on end, afraid of missing calls and of receiving bad news. Time felt extended, partly due to the fact that Donna herself continued to be in isolation. She was unable to go out of the house - waiting became the main thing to do. Sometimes Donna called the ICU, but knowing how busy they were, she tried not to do so.
Waiting was also very difficult for Simon’s children. Once, Donna and Simon’s daughter went to the hospital to see if they could see him. Whilst Donna knew this was likely not going to be allowed, the chat her daughter had with the doctor in the visitor room was really helpful. After that, the family could FaceTime Simon, which helped them as a family.
The doctors communicated openly and honestly. Whilst Donna was hopeful throughout, she simultaneously realised how critical Simon’s condition was whilst he was in ICU.
Keeping others updated was difficult for Donna, especially as it had to be done over the phone. It was again difficult to communicate well in a way that others were not getting their hopes up unrealistically. Some of her family members are clinically trained, which meant they asked for numbers and figures and oxygen levels. Donna had some knowledge on these, but not always enough – and numbers were changing all the time. Donna kept notes to be able to relay the correct information. Eventually the doctors who Donna spoke to recommended not to focus on numbers too much, but rather on how Simon was doing that day.
Although a doctor on a Friday night had carefully suggested that there might be “a little bit of a turnaround”, Simon took a big step backwards the following day. Donna and her daughter received a phone call from a consultant who told them it would be best if they came to the hospital to see him. There was a choice as to when to go in, and Donna felt it would be best to go in the afternoon so that Simon’s other children could join.
Donna, her daughter and her partner at the time, her two step-children, and daughter in law went to hospital. Simon’s older children went into the room first, whilst Donna, her daughter and her partner waited in the visitor room. Then Donna, her daughter and partner went in. It was good for the rest of the family to speak to a consultant, as it had been Donna who had directly been in touch with them until then.
It took a while to put on the PPE. The PPE restricted how they could relate to Simon. They were able to spend some time with him without many others present in the room. The staff were helpful, and one staff member who had taken care of Simon was quite emotional. It was difficult to know when to leave.
After they had left the room, the clinical team turned the machines off. They had said it could take quite a while, but everything went relatively fast. Simon’s older children had gone home, and Donna and her daughter had waited. They were able to see Simon again in the Chapel of Rest. Donna describes this moment as traumatic, as this time all the tubes that had previously been there were now suddenly gone, and whilst they were no longer in the same room, they were still in the hospital environment. Also, having to take his belongings on the day (due to Covid, the hospital preferred that there were fewer moments for which relatives came to hospital) was quite difficult, especially for Donna’s daughter, who did not understand what her mother was signing for.
The family needed to isolate at home for 10 days following the visit to hospital. This meant that they could only communicate via FaceTime and phone, and nobody could comfort and cuddle them in their grief. Funeral arrangements had to be made from the home, although the decision to have the funeral after a month allowed both for some time to prepare, as well as arranging some things in person (e.g. going to the undertaker). The funeral had 30 people and a webcast.
The family received a lot of support from a large network of friends, family and colleagues, who sent cards and flowers and called. Professional support included the option to have bereavement support, but Donna preferred to have this face-to-face, so was still waiting on this at the time of the interview.
Looking back, Donna reflects what may have helped her through her experience: visiting, more awareness of different symptoms of Covid, and more communication between staff and herself, although she understands why this was difficult. Although she anticipated this to be difficult, Donna was about to go back to work shortly after the interview.
Her message to others was to talk to staff and take all the support offered. She furthermore noted that being aware that others around you have also lost somebody in your loved one, can be a form of togetherness in grieving, which she herself found helpful to become aware of.
Donna felt she may have taken her husband to hospital sooner had she had an oximeter.
Donna felt she may have taken her husband to hospital sooner had she had an oximeter.
A friend of mine, their daughter’s a doctor, and they had said get the oxygen meter in. So, I’ve now since told my work and lots of other people to get an oxygen meter, which they have done, because I think if I’d had that I might have noticed perhaps oh god, the oxygen’s really low, he needs to go in sooner. Not that I’m saying it would make a big difference, because obviously with Covid it affects different people in different ways, and I’m not saying if I’d got him into hospital any earlier it would have helped. Difficult. But it’s things that go through your mind, because I have now passed that knowledge on to other people, the different symptoms, the oxygen meter thing. My work, who are a care company, didn’t even realise about oxygen meters until I said about getting a little oxygen thing, and they’ve done that now for staff who have gone down with Covid since.
When Simon became increasingly unwell, Donna was in self-isolation so that their daughter had to take him to A&E.
When Simon became increasingly unwell, Donna was in self-isolation so that their daughter had to take him to A&E.
So, I called the ambulance and that’s when they said could they speak to Simon, which they did, and they said they couldn't come, it was a day that was really busy, they couldn’t come. So, we had a bit of that before because when I was poorly six years ago, they didn’t come for me either.
So, I thought I’ve got to get him to the hospital, and I said to my daughter, Sophie, could you come from work, come and get dad and take him to hospital, because I’m self-isolating, he needs to go into hospital. I didn’t really think it was really urgent, I have to say. Even though I call the emergency services often for patients. I dealt with it straight away, then my daughter came, and Simon was upstairs, and it took ages, it took him about an hour to get ready. He was having a shower and getting ready, and I went up to say come on, we’ve got to hurry up, you’ve got to go to hospital now. So, my daughter took him into the local hospital, and I packed up some belongings and I just said to Simon, I’ll see you soon, thinking that I would see him soon, because I never really thought it was so serious. I just thought the oxygen and whatever, antibiotics. And that’s when he obviously stayed in, and we were all liaising as family. But I think it’s more difficult if you’ve got two people that have got Covid and are unwell because you’re trying to deal with it on your own without anybody in here.
So, then he went into hospital with your daughter?
Yeah. With my daughter. Little bit worrying. My daughter said, where shall I take dad in? I said, oh, go to A&E, leave him in the car, get out, go and ask at reception. He had a mask on, they both did. She knew the protocol. So, she then took him in, because he was a little bit wobbly. They went past A&E, so other people were sitting in A&E, and so you’re taking a Covid patient through A&E, past a red line, and then she has to leave him there because she wasn’t allowed to go in any further because of Covid. Because obviously it was back in January, there were more casualties, more people that had got it. So, she felt a little bit unnerved by taking him through A&E where there was people that perhaps didn’t have Covid. Then she left him there with a health professional, didn’t just leave him. That was it. Then we said we’ll keep messaging. He had his phone and iPad, which was really handy, and that was his lifeline in there.
Donna was frequently told that her husband was stable but critical.
Donna was frequently told that her husband was stable but critical.
At this point did you have any sense of how sick he was? What were your thoughts?
My thoughts were, yes, he’s quite sick, because obviously going back into having more oxygen on the hood, and because of being medical I thought oh, he’s not very good. And also, when the doctors do speak to you in ITU they do tell you the truth. So, it is quite harsh, but they’re not saying he’s better and he’s not, but you know in ITU it’s critical, and you’re hearing that word, it’s critical care. So, it is critical. It is quite difficult because you don’t want to hear that. So, any little glimpse of anything positive…so when there was a little time of ‘he’s stable’, things like that, stable but critical. We were having a lot of stable but critical. So, you had a little bit of hope, oh, he’s stable but critical, because obviously he would be because he’s in ITU. Then when you got little snippets…but the doctors did warn you that if you had a little snippet don’t raise your hopes too much because it doesn’t mean there’s a great recovery, it just means there’s a little bit of progress. So, on one occasion one doctor said there’s 50/50, the next doctor was saying there’s 20/30 and we were like, oh.
So, when we were hearing the bad news, it wasn’t great, obviously, because, A, you couldn’t visit, you couldn’t talk, you were only getting the one call a day, and once you had that call you had to wait round to the next day to get another call. And if you had a little bit of good information, you thought oh, that’s great, you can carry on your day fairly…oh good, there’s going to possibly be a recovery. They don’t give you false hope, but each doctor’s different in how they talk to you, obviously, and some doctors I gather that were brought in from different departments. I know I spoke to a consultant from urology a couple of times, which are still doctors and consultants but obviously they were so busy, and they had to keep up with everybody, I can understand that, but it’s still quite hard just to wait for that one phone call every day. That’s the hardest thing.
So, did that phone call come at a specific time of day?
No. I can’t remember now. At first, we didn’t get a great lot of information. It was a little bit slow when he was on the ward, but in ITU obviously then he was not well so then you were getting a phone call later in the day, usually three o’clock, four, five. Obviously, it’s when they could and when they thought he was stable enough to ring you, and of course I know they’re busy.
And then I found at the very end when he was very, very sick I was having a couple of phone calls 11, one o’clock, a little bit earlier, so I thought oh, if the calls are coming earlier that’s not great because he’s not very good, whereas a later call I thought oh, he’s had a better day. Because otherwise if he’d been really sick in the very beginning, they would have called me earlier and said yes, he’s very sick, we’ll call you when you’ve got to come in. So, it was good for me that the call was later in the day because I felt a little bit reassured at the time.
Donna phoned the hospital to see why Simon had not texted them to find out he had been ventilated.
Donna phoned the hospital to see why Simon had not texted them to find out he had been ventilated.
I have had a conversation recently with a doctor and a unit manager, because when he was ventilated, we didn’t get the call. My daughter said, oh, have you heard from Dad this morning? This was the Saturday morning on 16th of January. I said, oh no. Normally he would say, are you awake? It was about ten o’clock or whatever. I said, oh no, I haven’t, I’ll phone the hospital. So, I phoned the hospital and they had to say then they’d ventilated him. So, I have since asked was it a quick decision because obviously he was unwell with his oxygen levels, was it a quick during the night, unwell in the morning, did he know? And I have been told since that… Because nobody phoned me. I phoned them. Which was fine. It wasn’t a complaint it was just the fact that I phoned them… He would have obviously given consent. I’ve been told it would have been mentioned at some stage that if we need to do these processes can we do them, and he would have given consent obviously because he wanted to get better. I think I just found it a bit of a shock where we didn’t know he’d been ventilated, but people have said to me it would have been done quick, they’d have had to get the anaesthetist down and then they should literally do it. They can’t start ringing round everybody saying is that all right, and because he would have given consent, obviously he was conscious and he had capacity, I’m assuming that… It’s just for us we didn’t get a…not a goodbye. I got a goodbye the night before, as all the family members did, but we didn’t get a final goodbye because that was it, he was ventilated. So, we feel that’s a little bit of a strange one really. But I have talked to the hospital about that.
Donna sat by the phone for 20 days, afraid to miss a call, and only asked staff to call her daughter when she had to be elsewhere.
Donna sat by the phone for 20 days, afraid to miss a call, and only asked staff to call her daughter when she had to be elsewhere.
I literally from the time Simon went into hospital I took the phone by the bed, obviously, all day with me, in the shower, because I was so frightened, I was going to get a phone call to say could you come now. I didn’t want to miss it. I had a couple of appointments at the hospital. One was my vaccine. So, my daughter then took the calls from the hospital, and actually that was quite a nice relief for me because I couldn’t take the phone so I knew they couldn’t phone me with bad news. It was quite nice when somebody else had the phone. So, when they phoned my daughter that sort of took it off me a little bit, because I was waiting for bad news.
Does that mean they were calling you on the landline?
Yeah, they were calling me on the landline or the mobile, but on a couple of occasions where I had the appointments at the hospital myself, they called my daughter, because I said I’ve got a couple of appointments, if you can’t get hold of me, because I was so frightened, they couldn’t get hold of me, I’m going to be going out, could you call my daughter, so they did. The phone calls were on the landline normally. That’s why I stayed in. I stayed in anyway because of the COVID and the situation. So, I was here.
After your quarantine for your own Covid positive test you also stayed in, you were saying.
Yeah. I can’t remember how long. I didn’t go out. Because I’m never off work. I literally just sat by this phone from 29 December when I was ill, and Simon went in on 5 January, and I literally sat by the phone a good 20 or more days, or more than that. I literally just sat here. Because you are frightened of missing the calls. Even though you know that they’re going to get hold of you, but I thought oh, what if, what if. You’re frightened of missing the calls all the time. And Sophie felt the same, when she had the calls, she was frightened of missing any calls.
Donna had many messages from friends and family who were wanting to know how her husband was doing.
Donna had many messages from friends and family who were wanting to know how her husband was doing.
Because I was the only one liaising with the hospital and then doing this Facetiming, you were having to try and relay that information. To be fair, it’s like being at work, trying to relay about your loved one to the rest of the family and everybody. I was getting literally 40 calls and messages a day, because we’ve got a lot of friends and family. So, everybody wanted to know. And it was very difficult to try and tell people, family members and friends, that there wasn’t too much… Because the minute you said oh, little bit brighter today, they said oh great, great. So, everybody looks at it differently and they think there’s going to be huge improvement. Then you’re having to say the next day there’s not a big improvement and things aren’t very good. So, we were really careful how we told everyone. But yeah, holding it together, because I was the only one, apart from my daughter, who was struggling. She was very helpful because she was staying with me, we were Facetiming. So, it was both of us really trying to hold it all together with everyone else. And because it’s my husband, you’ve got friends and family and children, but it’s your husband, isn’t it? So that’s what’s harder.
Did you feel like you had to make any decisions anywhere between his admission and when you last saw him?
Yes, obviously there’s quite a lot of decisions because day to day life has to keep going, but you’re stuck here not being able to visit, not being able to go out, talking on the phone and then trying to, I’ve got to make that decision when you got the news to phone the rest of the family. That was quite hard. So, you’re trying to make a decision, right, I’m going to phone… I did it in order. I phoned our daughter first, then my stepson, then my stepdaughter, and then other family members and friends. So, you’re making those decisions all the time, of different…and you’re really careful to not give too much information because you don’t want to jinx the situation, so you’re really careful of what you say, because otherwise, you didn’t know which way it was going. He could have made a really good recovery and come out of ventilation, which people do, or the other decision where it’s not good at all, you know. So yeah, you’re having to make decisions all the time.
Eventually, Donna found it more helpful to focus on how Simon was doing than to know his saturation levels.
Eventually, Donna found it more helpful to focus on how Simon was doing than to know his saturation levels.
You mentioned that your family is medical, so do you feel like that helped you or that hindered you in some way?
Both. It prepares you, because I’ve always been prepared, because I obviously have dealt with end of life and lots of different people throughout a lot of years, but then sometimes if you’ve got too much information it’s not a great thing because you’re knowing what’s going to happen.
So obviously when I kept asking about the figures and numbers, because everyone was asking me to ask what’s the sats, what’s the oxygen, what’s this, what’s that, because they were nurses and things, you’re like, oh, and I was getting in a muddle and trying to portray that over, and then they were going try to forget the figures and numbers because things change all the time. So, I could get that eventually and just focus on the now, how is Simon today, without thinking about figures, numbers. So, yeah, it’s a bit of both. It helps you but it doeOKs hinder you, because then you know a little bit too much, especially if you’ve got family members that are medical it’s not always a great thing when you’ve got your loved one in hospital, in ITU. It’s probably best not to have the knowledge, possibly. Not sure.
Donna, her daughter and partner, and two stepdaughters went to hospital to say their goodbyes to Simon. They visited in threes.
Donna, her daughter and partner, and two stepdaughters went to hospital to say their goodbyes to Simon. They visited in threes.
And also, when Simon was not good on the Sunday when he passed away on the Sunday we had to go to my parents and we did a quick Facetiming of saying goodbye, because my parents are in their 80s and they were very fond of Simon. It wasn’t a great thing to do in hindsight, but they hadn’t seen him in weeks and weeks, so I wanted them to say goodbye, which wasn’t great, looking back. But we knew that the six of us could go across to the hospital and say our goodbyes, but we knew our parents couldn’t, and they had health issues and they weren’t allowed to go out, obviously.
When you say the six of you, that’s you, your daughter and his children is it?
My daughter and her partner at the time, and myself, and then my stepdaughter, my stepson, so that’s Simon’s older children, and my daughter-in-law. So, six of us went down. Because at first the hospital said how many of you, and I said four, but obviously I had my daughter-in-law and my daughter’s partner. So, we went down and thought well, we’ll just go to the visitor’s room and if they don’t let us in, they don’t let us in, but if they do, that’s a bonus. At least we’re all in the visitor’s room. We can talk to the consultant about any options, which is what the family did. They talked about the options and then we said could we go in, and the consultant at the time said yes, in threes, so that’s what we did. So, my stepdaughter, stepson and daughter-in-law went in first for quite a while. We had quite a while. We were very lucky. They came out after, not an hour, but less. And then myself and Sophie, my daughter, and her partner went in.
Donna, her daughter and her partner saw Simon before and after the ventilator was stopped. Wearing PPE made the encounter more difficult.
Donna, her daughter and her partner saw Simon before and after the ventilator was stopped. Wearing PPE made the encounter more difficult.
Obviously, it took a while to get the PPE up, and we were allowed to go in. Then we came out and my daughter and I went back in after Simon had passed because they had to turn all the machinery off. We had said how long will it take, and I think it was mentioned two hours, but I don’t know, it was a bit hazy. But it didn’t take very long, it was only about five minutes. It was quite quick. They’d lowered everything, I think. Then myself and my daughter, Sophie, we PPE’d up again and went back in. So, we were with him at, not the end, but after he’d passed away, just spent a bit of time with him. Because there was only person, which was Simon, on the ward, and one nurse, in a way I suppose we were quite lucky because it was quite private, and it was the end of a day and there was nobody else on that ward. So, we did have the privacy as well, which we were grateful for. There wasn’t lots of patients around.
So, when they made that decision to turn off the machinery you were expecting it to take longer. So, you weren’t expecting to be able to go back in then?
We said could we go back in, and the nurses, I think they had to deal with some things, and I said, well, Sophie and I would like to go back in, because the rest of the family had gone by then. Sophie and I would like to go back in, and they had said that was fine. Obviously, the PPE was off, we had to put the PPE back on. I think Sophie thought we might go and sit by Simon’s bed as the machines were going, so we’d be with him, but we didn’t get that chance. I’m not quite sure why. It’s a bit hazy. IT was obviously quite quick, and also we’d taken the PPE off and we had to put the PPE back on and then go back in. So, I’m not sure. But that was fine. It was probably better that way in a way than perhaps being there at the time, looking back. It’s difficult to say really. So, it was very daunting, as you can imagine, because you’re visiting somebody in PPE, not really meant to hold their hand, you’ve got all the whole lot on and you’re sitting by somebody’s bedside in full PPE, and that’s quite difficult as well really. That was quite difficult for us all.
Donna found the end-of-life visit to her husband Simon traumatic, both for her and her daughter.
Donna found the end-of-life visit to her husband Simon traumatic, both for her and her daughter.
So, when Simon did pass away how do you look back at that moment?
Quite traumatic, because it’s like a race against time. So, when he did pass away, when my daughter, Sophie, and I went back in, it’s very traumatic. It was traumatic, and it was traumatic for Sophie as well. Because of all the tubes and things and then suddenly those aren’t there but you’re still in the hospital setting in ITU, it’s really scary. And you’re not in a room by yourself, even though we were on the ward by ourselves, because there was nobody else there, it’s quite traumatic, and especially with all the PPE. You can’t cuddle anybody or cuddle them you’re not really meant to. And I feel for the staff, because one particular member of staff was really emotional. She’d just come onto shift, she’d been there a lot of years, was quite high up, and she was quite emotional, she had to apologise to us, which was a shame, apologise for being emotional. I thought that’s awful, isn’t it? I said, don’t apologise. This particular person had looked after him on a ward, taken him down to the ward, and there they were having to try and put a brave face on because they had to.
So, there were we, we were really emotional, it was late at night, it was cold, winter, and there we were on the ward. We didn’t really know when to leave. We stayed for a while and then I said to Sophie, we’re going to go now. That’s when we saw him in the chapel of rest. I did, and I did persuade my daughter to and that was still a bit traumatic. Because I thought that might be easier for us to see him in the chapel of rest because we’d seen Simon on the ward, and it was all a lot of trauma. But I think she still felt trauma with it all because it’s her dad. Yeah, it’s not very nice, obviously. And you’re not in a room by yourself. Even though there wasn’t a lot of people around, thank goodness. But if there had have been that would have been really difficult. Because my friend when her husband died six days later, I think there were people on the ward and she just had curtains round, not that anyone could do anything about that, but it’s not as private is it? But everybody made it really stress free. They were very lovely.
To Donna, taking the belongings after her husband’s death felt very final. Her daughter was distressed seeing her mother sign papers for receiving them.
To Donna, taking the belongings after her husband’s death felt very final. Her daughter was distressed seeing her mother sign papers for receiving them.
I think the only thing is, because of the Covid I was asked to take Simon’s belongings, and my daughter was like nearly hysterical, what are you signing, what are you signing? That was when he was alive. I said, I’m only signing to take the belongings because you don’t want people to keep coming back to a Covid ward to get belongings, and I understood that, but she was a little bit, Mum, what you signing? I said, I’m only signing for belongings, because they won’t want us…
So, you’re actually leaving a hospital after Simon had passed away with two bags of belongings, walking down a corridor. Quite hard, I think. And then you were told you weren’t allowed to open the belongings for I think…first of all it was 72 hours, then it was ten days. Well, we did leave them the ten days, to be fair, so we didn’t actually touch them. We brought them into the house, but we didn’t touch them for ten days. That was a bit like here’s the belongings…because they don’t want you back in. I understand why. But quite hard when someone’s passed away to go back in.
What were these belongings?
Well, belongings that he’d taken into hospital, and obviously his glasses, wallet, personal…
Phone?
Phone, iPad, personal things, two bags. Whereas normally you’d go and get them I think downstairs at another department, but obviously with the Covid I can understand they don’t want you in and out. It was very final, because you’re mourning, and you’re really upset and you’re going and then you’ve got these belongings as well to take. It's just very daunting.